The hidden role informal caregivers play in health care | Scott Williams

譯者: Lilian Chiu 審譯者: SF Huang

Let's put the care back into health care.

讓我們把「照護」帶回醫療保健中。

I've been working in the healthcare sector for the last 15 years,

我已在醫療保健部門工作十五年了，

and one of the things that drew me to this sector

吸引我進入這一行的部分原因

was my interest in the care component of our healthcare systems --

是我對醫療保健體系中的 照護這個部分很感興趣 ───

more specifically,

更明確來說，

to the invaluable role played by carers.

是照顧者所扮演的珍貴角色。

Now, how many of you in this room consider yourself a carer?

在座各位有誰認為自己算是照顧者？

By this, I mean how many of you have cared for someone

我的意思是有多少位曾經照護過

suffering from an illness, injury or disability?

生病、受傷或身心障礙的人？

Can you raise your hand if this is the case?

曾有過這些經驗的人能否舉一下手？

About half of the room.

大約一半的人。

I want to thank all of you who raised your hands

我要感謝所有舉手的人

for the time that you've spent as a carer.

在身為照顧者時所付出的時間。

What you do is extremely precious.

你們所做的事是非常可貴的。

I am a former cared-for patient myself.

我曾是需要被照護的病人。

When I was a teenager, I suffered from Lyme disease

我在青少年時期罹患了萊姆病，

and underwent 18 months of antibiotic treatment.

接受了十八個月的抗生素治療。

I was repeatedly misdiagnosed:

我一次又一次地被誤診：

bacterial meningitis, fibromyalgia, you name it.

細菌性腦膜炎、纖維肌痛症， 什麼樣的誤診都有。

They couldn't figure it out.

他們摸不著頭緒。

And if I'm standing here in front of you today,

今天我還能站在各位面前，

it's because I owe my life

都要歸功於一位照顧者，

to the stubbornness and commitment of one carer.

他的固執和奉獻救了我的命。

He did everything he could for me --

他為我竭盡所能───

driving long distances from one treatment center to another,

不惜長途跋涉在各個治療中心間，

searching for the best option,

只為了尋找最好的治療方法，

and above all, never giving up,

最重要的是，他從不放棄，

despite the difficulties he encountered,

儘管他遇到許多困難，

including from a work and quality-of-life perspective.

包括在工作上和生活品質層面上。

That was my father.

那個人就是我父親。

I recovered, and this is largely thanks to his dedication.

我恢復了，很大一部分 要歸功於他的奉獻。

This experience turned me into a patient advocate.

這段經驗讓我變成了病人代理人。

The closer I looked, the more I saw carers providing the same kind of support

我越仔細看就越發現 照顧者所提供的支援

和我父親提供給我的是一樣的，

that my father provided to me,

and playing a crucial role in the healthcare system.

且這在醫療保健體系中 扮演了關鍵性的角色。

I don't think it's an exaggeration to say

我覺得這樣說一點都不誇張：

that without informal carers like him,

若沒有像他這樣的非正式照顧者，

our health and social systems

我們的健康和社會體系會崩壞。

would crumble.

And yet, they're largely going unrecognized.

然而，他們大部分都沒有被認可。

I am now a long-distance carer for my mother,

我現在是母親的遠距照顧者，

who suffers from multiple chronic conditions.

她有多種慢性病纏身。

I understand, now more than ever,

我現在比以前更清楚地了解

the demands that caregivers face.

照顧者所面臨的需求。

With aging populations,

因為人口老化、

economic instability,

經濟不穩定、

healthcare system stress

醫療保健體系的壓力，

and increased incidents of long-term chronic care needs,

以及慢性病照護需求的增加，

the importance and demands on family caregivers

家庭照顧者的重要性和需求量

are greater than ever.

比以往都更高。

Carers all over the world are sacrificing their own physical,

世界各地的照顧者 都犧牲了自己體力上、

financial and psychosocial well-being

財務上及心理上的福祉，

to provide care for their loved ones.

來照護他們所愛的人。

Carers have their own limits and needs,

照顧者有他們自己的限制和需求，

and in absence of adequate support,

在沒有適當支持的情況下，

many could be stretched to the breaking point.

很多照顧者可能身心疲乏到了極限。

Once seen as a personal and private matter in family life,

這個曾經被視為是家庭生活中私人的

unpaid caregiving has formed the invisible backbone

無給薪照護，

已然成為全球健康及社會體系的 隱形骨幹支柱。

of our health and social systems all over the world.

Many of these carers are even in this room,

從剛剛舉手的狀況來看，

as we have just seen.

在場就有這些照顧者。

Who are they, and how many are they?

他們是什麼人？人數有多少？

What are the challenges that they are facing?

他們正面臨什麼樣的挑戰？

And, above all, how can we make sure that their value to patients,

最重要的是，我們要 如何確保他們對於病人、

our healthcare system and society

健康體系以及社會的價值

is recognized?

能夠被認可？

Anyone can be a carer, really:

任何人都可能成為照顧者，真的：

a 15-year-old girl caring for a parent with multiple sclerosis;

一位十五歲的女孩要照護 她得了硬化症的家長；

a 40-year-old man juggling full-time work

一位四十歲的男子要應付全職工作，

while caring for his family who lives far away;

同時還要照護住在很遠的家人；

a 60-year-old man caring for his wife who has terminal cancer;

一位六十歲的男子要照護 癌症末期的妻子；

or an 80-year-old woman caring for her husband

或是一位八十歲的婦女

需要照護得了阿茲海默症的先生。

who has Alzheimer's disease.

The things carers do for their patients are varied.

每位照顧者為他們的病人 所做的事皆不同。

They provide personal care,

他們提供個人照護，

like getting someone dressed,

比如協助更衣、

feeding them,

協助進食、

helping them to the bathroom,

協助如廁盥洗、

helping them move about.

協助他們四處走動。

They also provide a significant level of medical care,

他們也提供相當程度的醫療照護，

because they often know a lot about their loved one's condition and needs,

因為他們通常會更清楚 摯愛的狀況和需求，

sometimes better than the patients themselves,

有時候比病人本身還要清楚，

who may be paralyzed or confused by their diagnosis.

有的病人可能癱瘓了， 或對他們的診斷感到困惑。

In those situations,

在那些情況中，

carers are also advocates for the patient.

照顧者就是病人的代理人。

Also of critical importance

還有一點很重要，

is the fact that carers also provide emotional support.

就是照顧者也提供情感上的支持。

They organize doctor's appointments,

他們安排看醫生的時間、

they manage finances,

他們管理財務，

and they also deal with daily household tasks.

且他們也要處理每天家中的雜事。

These challenges are challenges that we can't ignore.

這些是我們不能忽視的挑戰。

There are currently more than 100 million carers

目前有超過一億名照顧者，

providing 80 percent of care across Europe.

提供全歐洲八成的照護。

And even if these numbers are impressive,

雖然這些數字讓人印象深刻，

they're most likely underestimated, given the lack of recognition of carers.

但數字可能都被低估了， 因為很多照顧者沒有被辨識出來。

As we have just seen,

如我們剛看到的，

many of you in this room weren't sure if you could be qualified

在座有許多人並不確定 自己是否符合資格算是

or considered to be a carer.

或被視為照顧者。

Many of you probably thought I was referring to a nurse

在座很多人可能以為我指的是護士，

or some other healthcare professional.

或是其他醫療保健的專業人士。

Also stunning

照顧者帶給

are the benefits that carers bring to our societies.

我們社會的利益也很驚人。

I want to give you just one example from Australia in 2015.

讓我舉個 2015 年澳洲的例子。

The annual value provided by informal carers

非正式照顧者照顧精神病患者

to those suffering from mental illness

所貢獻的年產值，

was evaluated at 13.2 billion Australian dollars.

估計有 132 億澳幣。

This is nearly two times what the Australian government spends

這幾乎是澳洲政府 每年花在心理健康服務上

on mental health services annually.

兩倍的金額。

These numbers, among others,

尤其這些數字，

demonstrate that if carers were to stop caring tomorrow,

顯示出如果照顧者明天停止照護，

our health and social systems would crumble.

我們的健康及社會體系就會崩壞。

And while the importance of these millions of silent carers

雖然數百萬名沉默照顧者的重要性

cannot be denied,

無法被否認，

they've largely been unnoticed

他們卻大多沒有受到政府、

by governments, healthcare systems

醫療保健體系，

以及私人公司的注意。

and private entities.

In addition, carers are facing enormous personal challenges.

此外，照顧者要面臨 巨大的個人挑戰，

Many carers face higher costs and can face financial difficulties,

許多照顧者面臨較高的成本， 可能因此要面臨財務困難，

given the fact that they may not be able to work full time

因為他們可能無法做全職工作，

or they may not be able to hold down a job altogether.

或他們可能無法保有一份工作。

Many studies have shown

許多研究顯示，

that often carers sacrifice their own health and well-being

通常，照顧者犧牲 他們自己的健康和福利，

in order to care for their loved ones.

以照護他們所愛的人。

Many carers spend so much time caring for their loved ones

許多照顧者花好多時間 來照護所愛的人，

that often their family and their relationships can suffer.

導致他們自己的家庭 和人際關係都可能受到負面影響。

Many carers report that often,

許多照顧者表示，

their employers don't have adequate policies in place

通常他們的僱主並沒有適當的政策

to support them.

來支持他們。

There has been improvement, though,

不過，全世界對於照顧者的認可

in the recognition of carers around the world.

已經有改善了。

Just a few years ago, an umbrella organization

幾年前，一個名為 「國際照顧者組織聯盟」，

called the International Alliance of Carer Organizations, or IACO,

簡稱 IACO 的綜合管理組織，

was formed to bring together carer groups from all over the world,

宗旨是要將全世界的 照顧者團體結合在一起，

to provide strategic direction,

以提供策略方向、

facilitate information sharing,

機構資訊分享、

as well as actively advocate for carers on an international level.

並在國際的層級上積極支援照顧者。

Private entities are also starting to recognize the situation of carers.

私人公司也開始認可照顧者的情況。

I am proud that my personal engagement

我很驕傲的是，

and enthusiasm towards this topic of carers

我個人對照顧者議題的投入和熱忱

found an echo in my own workplace.

在我工作的場所得到了回響。

My company is committed to this cause

我的公司對這個理想做出承諾，

and has developed an unprecedented framework

並為其員工以及整體社會開發出了

for its employees and society as a whole.

一個史無前例的架構。

The objective is to empower carers

目標是要讓照顧者有能力

to improve their own health and well-being

來改善他們自己的健康和福利，

and bring about a greater balance to their lives.

並讓他們在生活中取得更好的平衡。

Nevertheless, much more needs to be done

不過，還有好多需要做的，

to complement these relatively isolated initiatives.

來補足這些相對孤立的計畫方案。

Our societies are facing increased health pressures,

我們的社會正在面臨 越來越大的健康壓力，

including aging populations,

包括人口老化、

increased incidence of cancer and chronic conditions,

癌症和慢性病案例增多、

widespread inequality,

普遍的不平等，

amongst many others.

及許多其他狀況。

To confront these challenges,

若要對抗這些挑戰，

policymakers must look beyond traditional healthcare pathways

政策制訂者的眼界要跨越 傳統醫療保健的路徑

and employment policies

以及聘僱政策，

and recognize that informal care

他們得要承認，

will continue to form the bedrock of care.

非正式照護會持續形成照護的基礎。

Caring for someone should be a choice

照護某人應該是一種選擇，

and should be done without putting one's own well-being in the balance.

而且不能犧牲了自己的幸福和福利。

But to really put the care back into health care,

但如果要真的把照護 帶回到醫療保健中，

what's needed is a deep, societal, structural change.

需要的是社會、結構上的深層改變。

And this can only happen through a change in mindset.

而這只能藉由改變心態才得以實現。

And this can start today.

這可以從今天開始。

Today, we can plant the seed for a change

今天，我們能種下改變的種子，

for millions of carers around the world.

為了全世界數百萬的照顧者而種。

Here's what I want to suggest:

我的建議如下：

when you go home today

今天你回家時，

or to the office tomorrow morning,

或是明天早上到辦公室時，

embrace a carer.

擁抱一位照顧者。

Thank them,

謝謝他們，

offer him or her a bit of help,

提供他或她一點協助，

maybe even volunteer as a carer yourself for a couple hours a week.

也許自己每週花幾小時 去當照護志工。

If carers around the world felt better recognized,

若全世界的照顧者感受到 他們有更被認可，

it would not only improve their own health and well-being

不僅僅他們自己的健康 和福利以及滿足感

and sense of fulfillment,

可以獲得改善，

but it would also improve the lives of those that they're caring for.

被照護者的生活也能夠獲得改善。

Let's care more.

多關心他們一點吧。

Thank you.

謝謝。

(Applause)

（掌聲）